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OTTAWA — With her mother and younger sister as her guardian angels, Elena Grabari, 41, lived semi-independently for many years before learning, at age 34, that she had Asperger syndrome, a high-functioning form of autism.

People with Asperger’s have average or above-average intelligence, but they lack the intuitive ability to read social cues. They find it difficult to make friends and form relationships. They don’t adapt well to change. And they have a single-mindedness that can be odd and frustrating, but can also fuel creative genius.

Since her diagnosis, Elena has been in and out of hospitals, with her health and state of mind in steady decline, says her mother, Gabriela Grabari.

“She received wrong treatment and she still receives wrong treatment.”

Elena’s doctors say that in addition to having Asperger’s, she also has schizophrenia, a mental disorder in which people may experience hallucinations or delusions, hear voices or have confused thinking and behaviour.

It’s a diagnosis that Gabriela flatly rejects.

“She was asked, ‘Do you hear voices?’ And she asked me, ‘How does it mean to hear voices?’ She’s not able to hear voices.”

Gabriela has pushed unsuccessfully for her daughter to be taken off the powerful anti-psychotic drugs that, she says, are robbing Elena of her quality of life.

“She says, ‘Mommy, I’m not able to concentrate. I’m tired.’”

A better option, her mother believes, would be for Elena to get behaviour therapy and access to day programs for adults with developmental disabilities, which Eastern Ontario sorely lacks.

“She has anxiety, not schizophrenia,” says Gabriela. “Elena’s anxiety is increased with anti-psychotic medication. And this is stressful for her. If there are side effects (to the drugs), yes, I accept it — if there’s improvement. But she has no improvement.”

The dispute has put Gabriela at odds, not only with the psychiatrists treating her daughter, but also with members of her own family. In 2011, Gabriela lost the right to make medical decisions on behalf of her daughter, who was deemed not mentally capable of deciding for herself.

Elena’s sister now makes all of the care decisions, and Gabriela says she has been banned from visiting her daughter at the Royal Ottawa Mental Health Centre, where Elena is currently a patient in the schizophrenia unit, a place that her mother thinks is far from ideal.

Details of Elena Grabari’s ordeal are documented in a report by psychiatrists at the Royal. The report, which was provided to the Citizen by her mother, chronicles a seven-year odyssey of hospitalizations, medication changes and disagreements over Elena’s treatment.

Making the situation worse is the fact that Elena not only has difficulty verbalizing her thoughts because of Asperger’s, she also lacks a strong command of English (she speaks Romanian and French). That means her words can easily get lost in translation and her actions misconstrued as psychotic behaviour, says her mother.

Experts say the case is an extreme example of an all-too-common situation faced by adults with a “dual diagnosis” of autism and a mental illness.

“This is a complex case of a woman, diagnosed later in life with a complex series of mental-health issues, that is being treated by an unprepared and fragmented system,” says Kevin Stoddart, a clinical psychologist at Toronto’s Redpath Centre, which specializes in counselling adults on the spectrum.

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Few mental illnesses are as complex and confusing as schizophrenia. Weave that on top of an autism diagnosis and the result is a confounding knot of symptoms that are difficult for psychiatrists to tease apart, let alone treat effectively.

Indeed, while psychiatrists have been known to have difficulty distinguishing between Asperger’s and schizophrenia, it’s unusual for someone to have both diagnoses, says Stoddart.

“In our experience, true schizophrenia and psychotic symptoms are pretty rare and certainly occur no more frequently in folks on the spectrum than they do in the general population. But it’s understandable that some institutions may misinterpret some of the symptoms that appear schizophrenic-like or psychotic-like.”

Fewer than two per cent of people on the spectrum also have a diagnosis of schizophrenia, according to a U.S. study.

Other experts say the Grabari case highlights a gaping hole in the way psychiatrists in Canada are trained.

Currently, developmental disorders, such as autism, fall within the subspecialty of child psychiatry and are not part of a psychiatrist’s general training. That has led to a shortage of psychiatrists who are trained to recognize and treat the mental illnesses that often accompany autism in adults, says Dr. Peter Szatmari, a specialist in autism and head of the child psychiatry division at McMaster University.

To make matters worse, many of the existing dual-diagnosis services are for adults with an intellectual disability, defined as an IQ below 70. That leaves people with high-functioning autism or Asperger’s ineligible for many specialized services.

“You bounce back and forth between developmental disability services and mental-health services,” says Szatmari. “And you sort of fall between the cracks of those.”

Ontario has an estimated 100,000 adults on the spectrum, and nearly half of them have a mental illness as well. The most common are depression, anxiety and attention disorders, according to a study by Toronto’s Redpath Centre.

“It’s the anxiety and depression that they experience as adolescents and young adults that make it difficult for them to be socially engaged and to find independent living,” says Szatmari.

Despite a steady rise in autism rates among children, the government has done little to provide a well-organized and adequately funded range of services for the day they become adults, critics say. That has created a generation of people who have been institutionalized or misdiagnosed as mentally ill.

Many, like Grabari, cycle in and out of emergency rooms and psychiatric wards without ever being treated by doctors who have a firm grasp of mental illness when it’s entwined with autism, says Margaret Spoelstra, executive director of Autism Ontario, an advocacy group.

“The hospitals are ill-equipped to respond to them, and we do not have the capacity in our province to respond to the mental-health needs of people with autism — not even close.”

According to a 2008 report by Autism Ontario, the situation is particularly bad for adults who get a late-in-life diagnosis. “Adults with (autism) who are not diagnosed in childhood run a higher risk of being streamed into forensic or psychiatric units and subjected to inappropriate and even dangerous consequences or treatments,” says the report.

Officials at the Royal have declined to comment specifically on the Grabari case, citing patient confidentiality. However, they readily acknowledge that Eastern Ontario lacks the necessary resources to treat dual-diagnosis patients.

For example, among Ontario’s six psychiatric hospitals, the Royal is the only one without an in-patient unit dedicated to dual diagnosis, says Susan Farrell, clinical director of the Royal’s community mental-health program. That means patients with autism and a mental illness are assigned to beds according to their psychiatric diagnosis, such as schizophrenia or mood disorders.

“Not all people with a dual diagnosis must be served in a dual-diagnosis-specific service,” says Farrell. “Sometimes, their mental-health needs are the primary reason that something should be addressed.”

The Royal also lacks a community treatment team in the Ottawa area that specializes in treating only dual-diagnosis patients. Such a team would enable patients to be seen in an outpatient clinic by professionals who understand their complex symptoms, says Farrell. Currently, the only treatment team of that kind in the area is in Brockville and serves patients in the health region that covers Kingston and parts of Lanark County.

For patients in the health region encompassing Ottawa, the Royal’s only dual-diagnosis service is a consultation outreach team that provides patients, families, physicians and hospital-based psychiatrists with advice on assessment, diagnosis, crisis planning, education and training.

Last year, Farrell participated in a provincewide review of dual-diagnosis services at Ontario’s psychiatric hospitals. The review identified specific gaps in each of the province’s 14 health regions, but the hospitals lack the means to fill them, says Farrell.

“We have an overall need for resources to address the growing needs that we’ve got,” she says.

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Although she couldn’t pinpoint what set her apart, Elena Grabari started to grasp that she was different at age 12, when she and her family were still living in their native Romania.

“Why am I not like you others?” Elena asked her mother one day.

Gabriela didn’t know how to answer. On the surface, Elena seemed like any other child her age. She was a decent student who could read and write at grade level, speak French fluently and had a near-perfect memory, according to a psychologist who assessed her. She had a particular gift for remembering everything she heard.

And yet, it was clear that other children viewed Elena as a quirky loner and kept their distance, leaving her feeling hurt and isolated.

“Why don’t they play with me, too?” she asked her mother whenever Elena’s younger sister enjoyed play dates with a friend.

Her behaviours early in life — a single-minded focus, an insensitivity to social pleasantries — led to bullying at school, her mother says. After Elena graduated from high school and finished secretary school, Gabriela, a nuclear physicist, found her daughter a job at the Romanian research institute where she worked.

Elena enjoyed typing manuscripts and doing office work, which were a nice fit for someone comforted by routine. Elena joined a yoga class and started following a strict diet. She also started developing rigid and obsessive behaviours, says her mother.

“Every day at 12 o’clock, she ate polenta. Three times in the morning, she ate apples. She had lots and lots of routines.”

Then, at age 25, Elena lost her job and was unable to find a new one. Her sense of isolation and depression deepened, culminating in a mental-health crisis that led her to be hospitalized for the first time, says her mother.

In 2004, one year after the family moved to Ottawa, Elena had another breakdown, this time triggered by the departure of her mother for a trip back to Romania. “She was scared that I would not come back,” says Gabriela.

Elena’s fears of being abandoned led her to relive the childhood trauma of surviving an earthquake that killed thousands in Romania. Each time she had a breakdown, she would launch into screaming fits and start talking to herself, often repeating in Romanian snippets of conversation she remembered from years ago, says her mother.

Experts say major life changes — graduation from school, the loss of a job, the loss of a parent, or any sudden change — can be extremely traumatizing for someone with autism. But scientists are still trying to understand how autism unfolds over a lifetime, as hormones, medication and aging conspire to affect mood and brain function.

What’s clear is that when life throws curveballs at people on the spectrum, they have difficulty adjusting. Many, however, can eventually adapt to their surroundings, especially if they find jobs that fit their strengths and people who understand them.

Szatmari of McMaster University says adults with autism need integrated care plans that address not only their mental-health needs over the course of their lives, but also their friendship, vocational and housing needs. “We need people to start working with them in the teenage years so there’s continuity of care as they transition from adolescence into young adulthood.”

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